The nerve conduction test is finally complete. It really wasn't that horrible. Yahoo! I got some really good news. What I have may be fixable. I've got carpel tunnel. This is the first I've been told this. The EMG proved it in a big way. I also have Thoracic Outlet Syndrome which is where everything runs out of your neck and meets your shoulder and progresses downward. I need to go to a vascular dr to make sure the veins aren't being scrunched as well. I had a quickie MRI on my shoulder also this afternoon. They had a cancellation which was rushed but I didn't have to think about it for a week. I made that poor technician hold my hand the whole time! I may need surgery on my shoulder. Don't know about my wrist. I also don't know if the rest of my aches and pains will go away if I have the surgery so don't kick me off the board yet! (unless you want to) So next week I start 3x a week PT to try to unlock my shoulder. That's my big news. I'm really glad I tried this new Dr. The moral of my story is maybe I gave in too soon. My neurologist was treating the right location but the wrong things. I tried to be stoic and strong by not being a pest to my family. I hope all of this comes to a good ending!

Of course we're interested!!! http://www.healthboards.com/ubb/dance.gif What great news sweetpea!! I'm glad the test went ok for you too. I know you have been worried about it.

I hope all of it comes to a good ending too.

((hugs))
cat

Hi SweetPea,
I am sure glad everything went OK. I am not being a party pooper on how happy you feel that they have figured out what is going on with you, but please don't let them do surgery until every other method is tried for both of those conditions. I have C T and problems with the nerves in my shoulder and I was rushed into surgery for the CT because the Doctor told me there was no other way. I now have numbness in both my hands that will never go away and I get a spring feeling with pain like I did before surgery again in my wrists. So I still have CT after the surgeries. So I had three surgeries for nothing, well actually two surgeries for nothing. My De Curvein surgery in my left wrist did help. I hope you can find other methods to help but it is common for CT in FM patients too. Well shoot us FMers seem to have everything mixed in to it all. It took the Doctors 7 yrs before they did my De Curvein surgery. I did try all other possible methods to help it but nothing worked, but sometimes it doesn't. On to other things, I am so happy that the Doctor is trying to get an answer for your symptoms, that is the hardest part for FMers, I call it the waiting game yet I am in a good spot with my Doctor....finally, I just wish I could get my life straighted out. You may find some help with a PT for your shoulder. Keep us informed. Good Luck to you and please know I am right there with you. Oh and even if you don't have FM you can stay on this board!!!! Hugs, Raven

I've been wearing my wrist splint since Thursday. My shoulder feels pretty good. There is a huge nerve that runs through your wrist that can affect your arm all the way to the shoulder. I'm not totally pain free but it's better than I've been in months. The aches and pains not caused by my shoulder are still there as well. Don't get me wrong, it could be a fluke or I may be between flares. For those of you with similar pain as mine, you may want to immobolize your wrist for a day or two and see what happens. An ace bandadge should work. Will keep you updated.

PT started yesterday. Was somewhat painful. MRI showed adhesive capsulitis which is MRI talk for frozen shoulder. Yet another thing I thought I just had to live with. Hopefully PT 3x a week will break it loose. Again I have a test result to prove I have something other than MPS and fibro. As we all know, fibro has that stigma that people are faking or mental. I have had many doubts over the years in that area about myself. Even now with some of the pain released, I doubt myself that I really felt it, isn't that stupid? Pain is very fickle.

PAIN, PAIN, PAIN. I don't like this pt stuff. Go back at 10 today for more pain. Muscle spasms up neck and over head on one side. Muscle spasms up the other side and into jaw and behind ear. Arm really hurts. Is this progress?

Kick me, slap me, call me stupid. This past week has been a fluke. A break between spasms. It's all back. The insomnia, restless legs, the bouncing and jumping of nerves, the nausea and vomiting. The spasms in my shoulder, arm, and neck. I WAS A FOOL! I figured they found something tangible and they could fix it. I knew the spasms had broke the day before the nc test. I didn't know why. I was feeling pretty good when I started PT. Only a few shortlasting aches and pains considering the stretching he was doing. Now I have to go in and show the pt guy a whole different me. The me that made it possible to get SSD. I've been thinking of jobs I could do once they fix me. Been feeling guilty for taking money when I had such a good week and hopefully a good rest of the year. Now I'm back in the crapper again. Once again, my hopes are shot. I guess I got too cocky. Figured God had finally decided to give me my life back. I don't deserve to get better I guess.

One major difference to be grateful for. They put me on detrol last week. No more leaky leakys. Thank god for that one small miracle.

[This message has been edited by Sweet Pea (edited 02-04-2003).]

SweetPea, of course you deserve to feel better. We all do. At least you tried a treatment to help yourself. I am very sorry that it did not help. don't give up on trying different things to improve your condition. You might get lucky & find something that works for you. I too am on disability & am trying to cope with not working. I am (was) a litigation paralegal & loved my job. I also tried PT & was unable to tolerate it. I found that deep heat & massage decreases the pain for a few days. I don't go & have it done by a physical therapist (costs to much) but my husband has learned how & where to massage after I use a heating pad for about 20 minutes. You can also try low impact exercises at home to your tolerance on a given day, since our tolerance varies from day to day. Don't give up hope!! For a lot of us that is all we have.

Now I know why I stopped going to drs and tried to deal with my stuff myself. Today I met with an osteopath. As usual, I went through my siloquey of all my problems. I know it by heart. He pushed here and poked there and declared I have a pinched nerve in my shoulder. He can give me the name of a surgeon when the time comes. When is the time good after almost three years of this stuff? He gave me two exercises to do and said to do each once a day. He said these were fool proof and that I would be fixed in two weeks. I obviously looked like a fool when I walked out of there with my exercise sheet. My physical therapist was dumbfounded when I told him about these exercises. Speaking of physical therapy, my therapist must be part nazi. I actually hit 90 percent when I was previously 70 percent. He said I was doing a great job while I lay there with my teeth clenched, panting the lamaze pant, with tears rolling out of my eyes. I assume it should stop hurting soon???? If I didn't have him doing all the lifting and manipulating, my arm wouldn't go anywhere. Thank goodness he's a hunk or I'd have to slug him occasionally. I'm starting to miss my stoic me. My stubburn "I can deal with fibro" has changed to groans of pain from pt, dr hopping and frustration. As I said, this is why I quit before. The books say you can go to 30 or more drs and have no relief. I believed that and told myself I wouldn't hop. Now I've become a little bunny rabbit just from a few new tests and drs. Too bad Easter isn't coming up instead of Valentines!

My range of motion is now 100%. I can't maintain it without the therapist holding it down. It hurts like *&#. I still can not bring it back to normal position, he must do that. The amazing exercises are not working. My PT guy is getting a three times a week pattern of my symptoms. He is leaning back to the myofacial pain and fibro. Still waiting followup with dr who said thoracic outlet syndrome and prescribed the pt. Have found 2 local docs that do the surgery.

Found a gadget that I've been wearing starting today. Those new activated heat packs. They are supposed to last 8 hours. They need to make a full body suit for people like us. My shoulder is nice and toasty. Will see how constant heat helps. It surely can't hurt, can it?

HI I just want to say that I also suffer from pain in the neck and chest area which has been diagnos as tos and bachial plexus. Workers comp. has been fighting me all the way for two years. I have been fighting back just as hard. I have seen a second dr. for a second opinion. He claims that I have Carpel Tunnel and that I need surgery right away. My answer is NO.
I don't feel that I have Carpel Tunnel and that I want more proof. Is there another test besides an EMG test that can positively prove you have it. Thanks.

I'm going for a vascular compression evaluation. I guess they can tell about the carpal tunnel/tos from that. They use dopplers to check pulse points up and down your arm and shoulder. Will meet with surgeon about possible tos surgery. I think fixing the tos will fix the carpal tunnel. I don't think I'm rushing in to surgery if I have it soon. I've done alot of research. I've checked up on this dr on another health board and he comes highly recommended by other patients and my pain clinic. I have tried every avenue of treatment as you can see by my other posts. I had given up on anything other than fibro and mps. I have been up and down many, many times over the past almost three years.

I have tos in both shoulders with venous compression in both arms. I'm soo happy that it's not all in my head! Don't get me wrong, fibro and mps are not all in your head! That's not what I meant. Hope to schedule surgery soon. Depends on pt of frozen shoulder. Just thought I'd tell you all. Will have surgery on worst shoulder and hope the other doesn't get too bad because of overcompensation.

As I've told you all before, I had given up and accepted fibro and mps. I thought it was stupid to dr hop and embarrass myself by complaining all the time. Now I don't think it is so stupid.

A recap on symptoms: lower back pain, leg pain, arm and shoulder pain, neck pain, tingling in hand all on the left side. Pain sometimes crosses over to right neck and shoulder.

I don't want to diagnose you all but it's something to think about. Thanks for all your support for the past few months. I really appreciate it.

[This message has been edited by Sweet Pea (edited 03-26-2003).]

I know this goes on and on but it may help some people so I will keep at it. Feel free to shut me down any time. I know this isn't a tos board but...

Surgery is Monday for tos in left shoulder. I am so ready for it to be done. Am having symptoms in right wrist now as well in addition to right shoulder. Could be the beginnings of tos related carpal tunnel. They will go into my armpit and remove my first rib, disconnecting anything that is attached to it. Should have 90% pain relief. Man, I hope so. Just in time for the right one to start up.

Keep the faith, everybody.

Sweetpea

Surgery done and successful so far. Had a pinched nerve, vein and scar tissue. Took out rib as well Am in no rush to get other shoulder done. Incision is about 3 inches about three inches below armpit. Pain is being controlled with percocet. Also taking cipro. Have spent most of my time in bed since surgery which was Monday. Can't sit straight for any time yet. Expect 2-4 month recovery. Will know about improvement when incision heals and I start moving around.

Sweet Pea

I have so enjoyed your keeping us updated on your treatment path. Please keep the info coming.

needanap

Thanks Need a Nap. Knew people were reading but didn't know if it was mattering to anyone. I just thought if I could help one person, it is worth it. It's been a rough haul. The most pain I have now is localized skin pain. It's like when the cold goes away after the snow. My hubbie put on keri lotion and that seems to help. Still not getting my hopes up too much. Just in wait and see mode. I don't want anyone to think I'm gloating or anything. More like there might be a light at the end of the tunnel for all of us. Hoping for a final chapter soon. Thanks for being there.

hi,
Thanks for all of your posting.....after years of pain and dr hopping too...I am rooting for you, friend!!
My worst pain is also my neck. I have gotten pain shots into the pressure points..works wonderful..too bad the pain returns , tho.
You are encourageing me..to look for every possible avenue to "Help". Sweet Blessings, Donna

Two weeks post op. Changed from percoset to oxycoden. The whole shoulder is numb all the way around. Can't understand how something that is numb could feel so much pain. Feels really funny putting deordant on. Have massive pain in upper arm. Get spirally pain pushing in deep places in shoulder. Do not get knife in upper arm like I did during pt for frozen shoulder although frozen shoulder is still frozen. Most of the tos pain is gone. I think/hope that this will go away as the nerve heals which could take up to a year. As for the other arm? I'm praying like crazy that I won't ever have to get it done.

Sweet Pea,
Though it's hard to know yet, I'm hoping that your recent surgery solves your problems. It seems like you've been through so much.

Just wanted to let you know that I'm rootin' for you too.
Windy

Many of you newbies don't know me. I've been updating the "older" members on my situation periodically so here goes.

I'm about three months post op. Still am not sure I made the right decision about having surgery at times.

I'm taking oxycodone 3-4 daily for pain. I'm taking Topamax (instead of Neuroton) for nerve pain. Taking Nexium for GERD. Detrol for incontinence. Stool softeners because oxy is hard on the bowels. Ambien for sleep.

I still have flares on surgery side but not as close together. I have very painful nerve pain in my upper arm with multiple nerve shocks mostly in my armpit. My shoulder and armpit are still numb. My incision area still causes quite a bit of pain. I can not tolerate anything but tank tops. Short sleeves cause severe oversensitzation of my skin in my upper arm. After about a half hour, the shirt just has to come off. I'm hoping this will go away by winter or I'll be in big trouble.

My right arm and wrist still flare and burn. Just depends on what I do and how I do it. It'll be a long time before I have the surgery on that side. A loooong time.

Went back to PT 4 weeks post op. We were still working on the adhesive capsulitis (frozen shoulder) and restrengthing. We were also doing massage to prevent scar tissue from rebuilding. Technically I am facing 3 more months of PT.

I say technically because my husband is being laid off and my health insurance is dying at the end of this month. I have all my meds filled. My pcp gave me two months of detrol and nexium for free. I have 1 month each of topamax and oxycodone and ambian. I need to make these last for as long as I can. I cannot afford to pay full price for pt so it will have to wait. I don't want to think about all the progress I made going down the tubes. But I have no choice.

So there is the latest saga of Sweet Pea's Thoracic Outlet Syndrome, formerly known and treated as "fibromyalgia" and "myofacial pain syndrome". I am supposed to have a 4-6 month recovery period on this surgery. Technically it is still early. One of these days I might wake up with a totally "cured" left side. Then I might reconsider having the right side done, wait impatiently for the 4-6 month recovery period and my miracle will happen. I will have two good arms again. I can dream, can't I?

Thanks for listening,

Sweet Pea

[This message has been edited by Sweet Pea (edited 06-24-2003).]

[This message has been edited by Sweet Pea (edited 06-24-2003).]

I messed this up by editing so I'm bumping.

If any of you have any questions about Topamax or any of my other symptoms, feel free to ask. I'm a lurker.

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